The Ebola lottery: doctors baffled by different outcomes

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SUAKOKO, Liberia: Soon after he lost his parents to Ebola, Junior Samuel, 8, slumped in a plastic chair inside a treatment center here, listless, feverish and racked with aches. Within a day, he began bleeding from his gums, a particularly ominous sign.

“The kid’s very sick,” Elvis Ogweno, the ambulance supervisor, told a triage nurse when he brought the child in. “There’s no one to take care of him.”

Ten days later, 9-year-old Rancy Willie, who had also just lost his mother, inched out of a pickup truck in the driveway. Weak, hot with fever and barely able to swallow after lying outdoors for more than a day while awaiting help, he, too, would soon begin bleeding.

The boys became roommates at the treatment center, run by the U.S. charity International Medical Corps. They received essentially the same care. But one boy died hours before the other one went home, having recovered. And doctors and nurses were already struggling over the fate of a third boy, 5-year-old Williams Beyan.

Over and over, doctors here have been confounded by the divergent paths of patients whose cases appeared similar at first. “No matter how long we were there, we didn’t know how to predict it,” said Dr Steve Whiteley, a California emergency physician who volunteered.

They say they have been especially baffled by what Whiteley called the “light bulb” phenomenon – a patient who appeared to get better, then suddenly died. Wondering why the boys had different outcomes, the physicians asked: Were the children battling different levels of the virus early on? Did one start out healthier? Could their genes or immune systems have helped determine their fate? And what could health workers do to improve children’s chances?

The answers are hard to come by. In the absence of much lab testing and research, the disease seems heartbreakingly random.

A study published last month in the journal Emerging Infectious Diseases showed that children who survived a previous outbreak tended to have higher blood levels of an immune system activator, and those who died tended to have higher levels of substances that indicated dysfunction of the cells lining blood vessels, which can lead to organ failure. Among adults, the amounts of those proteins were not associated with either survival or death.

“Kids are not adults,” said Dr Anita McElroy, an assistant professor at Emory University School of Medicine and one of the authors of the study. “They really are different in how they respond to this virus.”

The researchers speculated that children might benefit from certain treatments – perhaps including statin drugs, which act on those cells lining blood vessels – but those possible remedies had not been studied in humans with Ebola and there was a chance that they could worsen outcomes.

As in previous, smaller outbreaks, children are underrepresented among Ebola patients in the current epidemic. According to the World Health Organisation (WHO), those under age 15 made up 13 per cent of cases in the epidemic’s first nine months, though they accounted for about 43 per cent of the population. They tend to be less exposed to major risk factors, such as caring for sick relatives or preparing bodies for burial.

Young people tend to fare better than adults in their 40s or older when they do contract the disease, although some studies have shown that very young children, those under 5, are more vulnerable than older children and young adults. Researchers speculate that the reason may be their immature immune systems, or the possibility that they are exposed to a larger initial dose of virus through close contact with their mothers.

Children under 15 as a whole in the current outbreak do not have an overall survival advantage, according to WHO statistics.

At the center here, half of the children under 15 have survived, a rate slightly, but not significantly, higher than that of patients overall. Sixteen children in that age group have been discharged or have died since the center opened in mid-September, after being built by the charity Save the Children. Seven are now being treated, as a recent surge in patients has filled the 26-bed confirmed ward to capacity.

Junior, who was small and weighed 44 pounds, seemed very ill at admission. He had no relatives to take care of him, and staff members, sweltering in their protective suits, could not always stay long enough to provide comfort. Like the other two boys with whom he would share the ward, his viral load was fairly high, a bad sign. He was given an intravenous line and oral liquids with electrolytes to combat dehydration.

Over days, his trajectory was noted.

Oct. 3: admitted with fever, vomiting, diarrhea, loss of appetite, difficulty swallowing, and pain in his abdomen, chest and head. Oct. 4: bleeding from gums. The only other child in the ward was “scared to death to be in the room with him,” Audrey Rangel, an American nurse, said during rounds.

Oct. 5: diarrhea and vomiting. Oct. 7: stable and “jumping around like crazy pants.” Oct. 10: fever of 102.

Rancy Willie arrived three days later. That evening, Rangel helped lift Rancy off the bed to weigh him. With her goggles fogged, she had a hard time reading the number on the scale – only 37 pounds, it appeared – which was needed to calculate the right doses of medications.

Rangel tied a glove around one limp arm, then the other, apologizing as she searched for a vein to start an IV. Other workers looked, too, and Rancy whimpered as they did, but it was difficult to see well at night in the unit, and the small boy was severely dehydrated. As the nurses held each forearm aloft, Rancy’s hand drooped like a flag.

“You’re so brave,” Rangel said. A colleague inserted the needle but missed his vein. Quickly, the team decided to wait for morning, when a nurse experienced in pediatrics would be on duty.

After wrapping the boy in a fuzzy orange and yellow blanket for the night, Rangel helped him sit up to drink a rehydration solution. His sips were so small, though, that he barely swallowed anything. Moments later, the nurse heard him moan. He vomited on the bed and over the rail.

“OK, better?” Rangel asked. Then another wave overtook him.

Everyone called Rancy by his last name, “Willie,” because there was no relative to correct them. The little boy’s voice was weak and hard to hear, muffled by the medical workers’ headgear.

Rancy was moved into Junior’s room on the ward for confirmed cases. Two nights later, Rancy fell, hit his head and began bleeding profusely. It took an hour and a half for a nurse to come because staff members were busy admitting very sick patients on the ward for suspected cases.

“I had to make a choice,” Bridget Ann Mulrooney, an American nurse, explained to her colleagues that night. There was limited time she could spend in her protective suit, and so many competing needs.

She had bandaged Rancy and put him to bed, but in the middle of the night he got up, confused, and began wandering around naked. Junior, spooked by what he thought was Rancy’s ghost, fled and found a bed in another part of the ward.

Junior no longer had a fever and had begun sitting outside during the day and eating again, his face brightening into a smile whenever he was greeted. Each day, he looked better. A doctor stopped during rounds one morning to pick him up and twirl him around.

On the night of Oct. 17, his fifth at the center, Rancy moaned and moaned.

“What do you want?” a nurse asked. She and a doctor cleaned his bloody diarrhea and gave him a Tylenol-like painkiller and a sedative to help him sleep.

He was bleeding from his eyes, nose and mouth. His sister and a cousin had been admitted and had taken Junior’s place in the room, but they were too sick to offer comfort.

Rancy, whose stepfather said he loved dancing and soccer and wanted to be a civil engineer, died before sunrise.

That morning, after more than two weeks at the center, Junior was discharged to live with his aunt and uncle, Ebola no longer detectable in his blood. He smiled broadly and said he had not been afraid until people around him began to die. On Friday, he said by phone that he hoped to go to school one day; he had never attended.

Williams, the 5-year-old, was still a patient when Junior left. His father, George Beyan, had been discharged the same day Williams tested positive for Ebola, and aid workers at the center encouraged him to come back to the ward to help care for his son.

During triage, a nurse checked off just about every symptom on the case investigation form for Williams: fever; vomiting; pain in his stomach, chest, muscles and joints; difficulty swallowing and breathing; a rash; and red eyes.

Beyan sat Williams up, encouraged him to eat and drink, asked staff members for extra juice, and even walked him outside to get some fresh air and sunlight. The father sat vigil as Williams napped, and he held him close overnight, wrapped in the same blanket.

Beyan would tell anyone who asked that his son was doing better, little by little. “Small, small,” he would say in Liberian English. The doctors wanted to believe it, too, even as Williams ran high fevers and had continuing diarrhea.

After all, Junior’s survival had surprised them, and so had Beyan’s. He had been staggering when he was admitted in early October, and he had hiccupped for days, a sign strongly associated with death from Ebola at the center. The disease was capricious, the doctors were learning.

Williams began crying one evening, after having had a 104-degree fever that day. He had just been outside watching a movie. Then he was gone.

Beyan was inconsolable. “My little boy,” he sobbed.

Source: The New York Times